Mary Ann O'Brien (Independent) | Oireachtas source

I move:

That Seanad Éireann:
- recognises that there are 1,400 children in Ireland with life-limiting conditions, who have complex needs throughout life and additional needs as they near death, with 350 such child deaths each year;
- commends the tremendous work being done by organisations such as the Jack and Jill Children?s Foundation and the Irish Hospice Foundation on behalf of many of these children by providing nursing care and support, as well as offering some respite to parents and families;
- notes with grave concern that there is no national home nursing care programme or budget for children with life-limiting conditions, which in many instances contravenes the best interests of the child, places an excessive burden on acute services, and imposes a hidden cost on the taxpayer;
- notes that putting in place a dedicated national home nursing care budget for children with life-limiting conditions is in line with the programme for Government commitment to a personal budget model ?so that people with disabilities or their families have the flexibility to make choices that suit their needs best?, with the policy, Palliative Care for Children with Life-Limiting Conditions in Ireland ? A National Policy 2010, and with Ireland?s international obligations under the UN Convention on the Rights of the Child;
- recognises the economic advantage of putting the right supports in place for parents to care for their children with life-limiting conditions at home, as set out in the report, ?There?s No Place Like Home ? A Cost and Outcomes Analysis of Alternative Models of Care for Young Children with Severe Disabilities in Ireland? 2010, which found that at ¤147,365 per year for hospital care as compared to ¤16,422 per child for Jack and Jill home nursing care, the average annual cost for hospital care for a severely disabled child is nine times more expensive, which means, therefore, that the Jack and Jill Children?s Foundation has saved the State up to ¤235 million since 1997, when multiplied by the 1,600 families supported at the cost of hospital care;
- appreciates that, over the past 15 years, the Jack and Jill Children?s Foundation has raised ¤36 million privately to fund its nationwide service, while the HSE grant during this same period was ¤4 million;
- acknowledges the recommendations of the value for money and policy review of disability services in Ireland published July 2012, which emphasises keeping the child-patient at home and the money following the patient principle;
- recalls with approval Ireland?s ratification of the United Nations Convention on the Rights of the Child on 28 September 1992 and welcomes the explicit recognition of the family as the ?fundamental group of society and the natural environment for the growth and well-being of all its members and particularly children?; and
- maintains, in keeping with Article 9 of the United Nations Convention on the Rights of the Child (Separation from Parents), that where there is no overriding medical necessity to the contrary, it is in the best interests of children with life-limiting conditions to be cared for at home.
Calls on the Minister for Health to:
>1. recognise the impact of not having a dedicated budget for a national home nursing care programme for children with life-limiting conditions in place, which results in: inconsistent supports between regions; ad hoc funding for home nursing care for children with life-limiting conditions; tremendous stress and unacceptable pressure on parents, whose energies are diverted to trying to secure resources to support their child at home; and
2. as a matter of urgency to commit to putting in place a national home nursing care programme for children with life-limiting conditions with a dedicated and trackable budget which will immediately result in savings for the State and uphold the best interests of the child.

I stand before the House as a mother who struggled for 24 months, day and night, with my husband Jonathan to nurse a child about whom the State, at the time, took the view that babies cry anyway, they gets lots of colic and some of them are up every night for months. However, when one has a child who is tube fed, has epileptic fits every 20 or 30 minutes and it takes 22 hours per day to get through if one is lucky, that child will break down the family and possibly break up one's marriage. It is an horrific experience.

I also stand before the House as a person. My experience was in 1997 to 1998 and while it was a long time ago, I still have the pain and passion in my heart. I visited a family on Roscommon last week as part of the Jack and Jill Children's Foundation. I went to see the mother and father of a little boy who has reached his fourth birthday and it is time for the HSE to take over the Jack and Jill Children's Foundation nursing hours and look after him. The father has lost his job, is beyond the edge of coping and I am very worried about him. The parents are looking after the little boy as best they can. They are fighting as best they can to give the child a dignified life and look after him at home. It was through all of this and going back to my own experience, when we found out and it became clear to us there was no help in the State, that we founded the Jack and Jill Children's Foundation back in 1998.

The good news is that this motion is very simple, measurable, achievable, realistic and timely given the forthcoming referendum on the rights of the child. I assure the number crunchers that we are not seeking additional money. I really want to stress that point. We know the economy is broke and we want to reallocate resources from one or other of the many budgets the HSE supports and that are meant to support these children. However, we must remember these children are usually not well enough to leave hospital or their homes to go to a special needs developmental school or weekend respite care. It is just not possible. These children get a chest infection at a drop of a hat. An organisation such as the Brothers of Charity, for example, is just not geared for such children. The little boy in Roscommon managed to attend his Brothers of Charity service on three days out of most of last year, which is not much good.

I want to ring-fence the existing budget to underpin a national home nursing care service that would save millions of euro every year by keeping children out of crowded and expensive hospital beds that are meant for acute patients. I am talking about using our existing budget in a more cost-effective way while recognising and serving the needs of our young vulnerable patients. Again, I remind my fellow Senators that hospital care is eight to nine times more expensive than home care. We know we are broke and need to save money. This is a great way if we can drive the HSE forward to save this money.

The 1,400 children with life-limiting conditions and their families are depending on us to prioritise and fund a national home nursing care programme by ring-fencing the money. We are not talking about a lot of money according to Professor Charles Normand of Trinity College Dublin - in or around ¤15 million. This is about putting the patient ? the child - and the health needs of that child first. I believe that when the Minister does the cost-benefit analysis, he will surely know that this is the right thing to do. Sleep-deprived parents throughout the country are being forced into battle to keep their children at home. They are forced as a last resort to take their stories to the media, something no family wants to do. Nurses are being strangled by red tape, wasting their nursing time and skills making telephone calls and writing letters lobbying on behalf of families. There are too many families on the brink of not coping and I have been there. I would like those present to imagine what it is like when one's child is having a fit every hour and being fed through a tube and the tube comes out. It is unimaginable.

As a businesswoman, I know that if something does not have a budget, it does not happen, no matter how much lip service it is given. To give them their due, up to now HSE personnel have robbed Peter to pay Paul when it comes to finding the budget for home care plans for precious, vulnerable children. They have dipped into geriatric budgets or equipment budgets or wherever they could find it. However, as the budget noose has been tightened increasingly within the battered and broken HSE system, the so-called no-budget barrier is being shoved in the faces of desperate parents, and that is what was shoved in the face of the parents in Roscommon last week. The mother and father started to cry quietly in front of me. The HSE and Brothers of Charity personnel looked at me and I looked at them and we put our hands up and thought what we could do.

There are brilliant people in the HSE but it is up to us to make the difficult change to reallocate and ring-fence budgets.

The inconsistencies of practices around the country are shocking. It appears that the HSE in Cork can ring-fence budgets for children but it cannot do so in Roscommon and Tipperary. A child born with severe brain damage and in need of 24-7 care has a much better chance of being nursed at home if he or she is born in Donegal, Louth, Cavan or Dublin. I gathered that information by telephoning all the Jack and Jill Children's Foundation nurses, as well as several special liaison hospice nurses in the last two days to ask them some simple questions. The HSE's inability to take over care plans of children under the wing of the Jack and Jill Children's Foundation is an alarming trend. As the foundation never wanted to take on more than it could deal with, we care for children under the age of four. Some 69 of our children will soon reach that age. It is approximately a year since the HSE was informed of this yet it states it simply does not have the budget. However, we know the budget is available.

The little boy in Roscommon has just turned four years old. He receives ten precious hours from the HSE and the Jack and Jill Children's Foundation has been giving him 12 hours. On a good night this little boy wakes on three occasions but on a bad night neither he nor his parents get any sleep. He is a perfect test case for us to try to put home care nursing in place. The Brothers of Charity, which also attended the meeting about the Roscommon baby, do amazing work but many of the main pillars in the disability group are getting enormous sums of money. The Brothers of Charity has a budget of ¤164 million. Could we not take ¤1.8 million? Could I even mention the unmentionable? The HSE gives Dóchas and some other foreign aid charities a couple of million euro. Could we not take ¤250,000 from one, ¤200,000 from another? We are broke and we are speaking about the most vulnerable, sick and desperate children, as well as their parents and siblings. The family is affected and breaks down.

It is ironic that we still do not have a budget for the vital service of home care for severely disabled children even though they have the right to that service under the UN Convention on the Rights of the Child, which was ratified by Ireland on 28 September 1992. My colleague, Senator van Turnhout, will expand on this argument.

We must recognise the economic advantage of putting the right supports in place for parents to care for their sick children at home. This argument is set out in the 2010 report, No Place Like Home, which conducted a cost and outcome analysis of alternative models of care for young children with severe disabilities in Ireland. The report found that hospital care for a severely disabled child cost ¤147,000 per year compared to approximately ¤18,000 for home nursing care by the Jack and Jill Children's Foundation. I am not here to speak solely about the Jack and Jill Children's Foundation but we happen to have a system which allows me to outline our figures. It is eight to nine times more expensive to put a child in hospital. There will be the occasional child who is in such need of intensive care that the family would prefer him or her to die in a hospice environment but 98% of families want to keep their children at home in his or her own room and around familiar smells, colours and toys. We have to get back to business. We do not have the money but we know it is eight to nine times cheaper.

A dedicated national home nursing care budget for children is in line with the commitment in the programme for Government to a personal budget model. As I have stated previously, the concept of client focused services does not appear to be part of the culture of the HSE. It does not seem willing to embrace such a model despite the best efforts of the Minister for Health to implement it. Approximately ¤1.5 billion is spent in the area of disability but the people affected have no say over the services they receive, where they receive them or who provides them. At the end of the day disabled people are consumers like the rest of us, and they deserve the power of choice.

The good news is that what we seek in this motion is achievable. A little bit of change and manoeuvring will be required but we can achieve our objective by working together as a group. Individualised funding is the Minister's vision, with a focus on giving the individual the right to support the life he or she wants to lead. In a child's case, the parent gives the child a little voice that says, "Please keep me at home where I can be surrounded by my family and friends". We should not speak about out of home respite care when a child does not travel comfortably, or pre-school services when he or she is not well enough to attend developmental pre-school. Give children a choice by giving their parents the funding for and choice of home care plans. Give them some dignity and respect. They are also citizens.

The decision is up to my fellow Senators. Will they shrug their shoulders and leave this evening saying the situation is terrible and that while acknowledging I was passionate about the subject there is nothing to be done about it, or will we all grab this opportunity to carefully examine the cost-benefit analysis and urge the Government to make this investment? We could thereby achieve the great goal of putting in place a national home nursing programme for the 1,400 children in Ireland with life limiting conditions, with a dedicated and trackable budget. That would be a smart move which would result in savings for the State and uphold the best interests and rights of children. The timing is right for this initiative, and it is realistic and measurable.